Facing an Intense World

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A few of my friends know that, late in life, I discovered that I have Asperger’s syndrome — or what today is known as autism spectrum disorder or ASD. Some still refuse to believe I have it.

And I can understand the reaction. I do not fit the most common ideas of autism. My symptoms, although never really hidden from view, escaped understanding for nearly 60 years. That’s partly because I also have a number of skills that are the opposite of what many people think of as autism.

Today after returning to Tallahassee from my hometown Pensacola, I stumbled across an article in my inbox from Salon that describes ASD in terms startlingly similar to what I have experienced. It rang true in a very deep sense. There is a link to the article below.

No one would have thought I had such a wide-ranging disability as ASD earlier in my life. In elementary school my high test scores put me in the top percentile and sent me on to an advanced track that lasted through high school. And my placement test scores were high enough to get me into an Ivy League college and then law school.

Like my father, I also had a knack for music, and piano seemed to come naturally to me, even though I had little interest in it. And my ability to write and use words was so strong that teachers in high school encouraged me to become a writer. I tested well in every subject, chiefly because I have strong skills at pattern recognition even in unfamiliar subjects.

I also had a painfully strong sense of empathy — something autistic people are supposed to lack, at least in the classic model laid down a few decades ago.

Once as a child I made my father pull over on a country road so I could rescue a litter of kittens abandoned there and take them a hundred miles back to Pensacola to find new homes. And when I first heard someone sing the words to “Puff the Magic Dragon,” I burst into sobs when the lyrics suggested the death of Jackie Paper. Deaths devastated me beyond description, even imaginary deaths and especially deaths of people in my family.

If anything, I had a mind that was overly sensitive to the world, not closed off from it. And my intelligence seemed to be linked to this sensitivity, bolstered by a nearly photographic memory.

But this intense sensitivity later would cause serious problems when I reached high school.

In 1971 in my first year of high school, my father moved our family from inside the City of Pensacola to a rural suburb called Beulah after African-American families bought homes in our neighborhood. At the time I really did not understand racism and the turmoil it was causing. So our move to a small Beulah farm did not make sense to me, not the way it did to my father.

What I did understand was that my new high school was an alien place where I knew no one and did not feel safe. It was the county’s agricultural high school, although it had been hastily outfitted with the first advanced placement program in the county as a result of white flight away from the city. To my school teacher mother, it made sense that I should have access to college-level courses so early in life.

But the dominant atmosphere at the school was still rural and its social life revolved around farming, sports, and little else. The small minority of AP students like myself were often shunned as nerds except for the few able to bridge the divide. My situation was even more precarious at the time because I was attempting without much success to come to terms with being gay — a nearly impossible task in the early 1970s.

Overall, there was an atmosphere of hostility and bullying that left me perpetually frightened. At one point I begged my parents to move me to a private liberal arts school back in the city — a request they declined. The one time I tried to get help from my father about the fear I felt at school, he told me to just act like a man. And then he turned back to watch a western on television. I never spoke with him again about the subject.

My parents totally misjudged how badly the new high school would affect me. Sensitive minds can do amazing things, but they also can feel amazing pain. What followed were three horrible years that left me at times too overwhelmed to function. In time I came to view my misery as a direct result of my father’s sudden decision to leave the city over racial issues.

The only saving graces were teachers in the AP track who saw my turmoil and went out of their way to help. They even encouraged me to pursue something I thought impossible — admission to Brown University. One teacher in particular told me that I would find a lot more people like myself at Brown. She was right. If I had not taken that step, I think I would have viewed myself as a freak for the rest of my life and died quite young.

I cannot fault medicine for failing to see my symptoms. The Asperger’s diagnosis did not exist at the time. No one knew that one of its key symptoms is the inability to understand social cues that most people handle without even thinking. All I understood at the time was that I could not say or do anything at social events without being ridiculed.

My father’s lingering death of cancer in the middle of my senior year of high school was the final push too far. It left me with a lingering trauma I will always associate with my high school — a trauma so bad I had a heart-pounding panic attack when I drove past the school in 2018, forty-four years after my graduation.

My father’s death also led to the worst year of my life, one that ultimately caused me to take a leave of absence from my first year of college. The problem was sensory overload that led me to a meltdown and then a shutdown.

One of the key features of ASD arises because of the hypersensitive brain. Too much sensory input can lead to an overload as the brain becomes swamped and unable to process everything that it perceives.

People who lack ASD — so-called “neurotypical” people — do not have this problem because their brains have a natural ability to filter out or buffer the overload. Their brains are closed off just enough to protect themselves, whereas the ASD brain is too open and unable to filter out the overload. Different people react in different ways to this overload, leading to a huge variation in symptoms.

After my father’s death, everything in my family life seemed in pieces and out of control. My mother, who probably was an Aspie herself, became nearly paralyzed. I compounded my own problem by enrolling in college for my first semester despite all the signs it was a very bad idea.

In fact, it was so disastrous I had a major meltdown. For people with ASD, a meltdown means simply that the brain has been stretched beyond its ability to process all the input it is receiving. My meltdown came one day on campus when things were not going well and I felt an unstoppable urge to hide from the entire world.

And that led to a shutdown — a period of time the ASD brain needs to reset itself and become able to handle the day-to-day demands of life again after a meltdown. For me, it took the remainder of my first full year of college. So, I wound up withdrawing from all classes and forfeiting part of a scholarship.

All of these old memories stirred to life this past week when I visited Pensacola again.

So this old problem was fresh on my mind when I returned home and found the Salon article waiting in my inbox. The article excerpts a book that gathers together a lot of research and study going back several years. One of the problems it addresses is the inadequacy of earlier theories of autism, which worked well for some patients but not others. These theories never explained people like me.

Obviously, the idea that autism is caused by an underactive brain has been in serious doubt for years now. Instead, a new theory of autism has emerged called “Intense World Syndrome,” according to this article. The idea is that people with ASD do not feel too little. They feel too much. Their brains are “over-wired” and hypersensitive. This theory encompasses far more people who have the condition, including people like me.

This is important because, at one time, autism was treated by efforts to stimulate the brain. But that may be exactly the wrong thing to do. I myself was repeatedly misdiagnosed for decades, leading to a number of inappropriate and even harmful treatments.

One of the hallmarks of my own experience has been the intensity of feeling. The world often seems to bombard me with too much — too much to handle, too much to process. It can push me into a meltdown and then into the crushing withdrawal of a shutdown.

But at the same time, I also can — at my best moments — feel things and make connections that can lead to remarkable creativity. And my creative moments are the times when I feel most alive, most at peace, and most joyful.

One other aspect of the Intense World theory also jibes with my own experience. Since learning I am an Aspie with a tendency toward sensory overload, I have made an active effort to reduce the unnecessary sensory input my brain receives. This includes eliminating daily television, building quiet time into the day, and not trying to take on all of the social and professional events I once attempted.

This approach has noticeably reduced my anxiety levels — and anxiety is one of the inevitable byproducts of sensory overload. Unchecked, anxiety can push people into other behaviors that produce still other problems, including addiction. Some recent studies suggest that some of the highest levels of addiction are among so-called “high functioning” Aspies, almost certainly because of out-of-control anxiety caused by sensory overload.

Here is the article I read today: https://www.salon.com/…/how-a-neuroscientists-infant-son-r…/

Image courtesy of MissLunaRose12 through Wikimedia Commons.